Compromised

Sian

Wednesday, 2 July 2003

Sian’s story is similar to Royden’s in that the midwive’s incompetencies caused problems shortly after his birth as opposed to during it.

For my husband, Adam, and I he was our first child. As an older Mum (38 yrs) I was totally ready to welcome my new baby into the world and become a Mum for the first time. Adam was very excited at the prospect of becoming a Dad for the first time too.

We spent Wednesday the 2nd July at home with contractions slowly building up as the day went on. At 6pm as contractions were stronger and closer we went to the Levin Maternity Unit. My LMC was our GP and he visited me at about 9pm. As contractions were “severe” but I was only 1-2cm dilated, he arranged for me to go through to Palmerston North Hospital as he thought an epidural would be required (not available in the smaller birthing units). Things happened pretty quickly from there as at about 10pm – before ambulance had even left Levin – I was 7-8cm dilated but my doctor (over the phone as he had returned home by then) said to continue to Palm. Nth as he thought I was possibly still hours away from giving birth. That was a most unpleasant, bumpy 45 minute trip I can tell you!! I had an overwhelming urge to push when we were still 20 minutes or so away and the pain of course, was intense. The midwife said I was fully dilated. When we arrived at hospital at 10.50pm I was told to push. “Sian Adam” arrived at 11.05pm! A beautiful, healthy baby boy weighing 6lb 13oz. with Agpar scores 6 at 1 minute then 10 at 5 minutes.

When you are a new mum it’s hard to know if your baby is feeding properly but I guess looking back I never really felt that he had “latched on” and had a good feed. But you trust the health professionals around you to ask you all the right questions and alert you to any potential signs that your baby may not be feeding too well. They all seemed happy with our progress and so we were allowed to go back to the Levin Maternity Unit for the rest of our post natal care. In hindsight – very bad move.

We left Palm. Nth at 1.30pm on 3rd July- Sian’s last feed was 11am but he had not yet passed urine. Upon arrival at Levin Maternity Unit he was not assessed by the midwife on duty – he should have been. She noted on her records that Sian had passed urine at Palm Nth hospital – when in fact he hadn’t. He was very sleepy all afternoon and didn’t wake to be fed. I had shown concern about that but was reassured that it was ok. His next feed was at 6pm – seven and a half hours after his last feed.( Many experts involved with newborns and their feeding patterns agree that newborns should feed every 4 hours but certainly no longer than 6 hourly.)

Overnight Sian fed more frequently but the “quality” of the feed was never recorded. (Charts are provided in Palm. Nth hospital which allow the mum/nurse to rate and record the quality of the feed from 1-10 – where 1 is basically not interested and 10 is latched well, audible sucks and swallows – or similar wording. Although under the same DHB, Mid Central Health, these same forms were not provided for use at the Levin Maternity Unit.) Sian was noted to be unsettled overnight with no wet nappies. The midwives are also supposed to record the consistency of baby’s stools – this never happened either at any time. It’s about monitoring input vs output!

The following morning, Friday 4th July, Sian became jaundiced, which is not an uncommon condition in newborns. He was put under phototherapy lights to treat the jaundice. Phototherapy can cause an “insensible water loss” in newborns so it is even more imperative to monitor input and output to ensure the baby does not become dehydrated when they are having this treatment. But all through that day and evening there was a very casual approach to Sian’s care. Poor record keeping with a dangerous lack of information available to the next midwife starting her shift was a feature, along with poor verbal handovers at shift changes. Because of this, Sian’s deteriorating condition was going unnoticed in that he was simply not getting enough food and fluids on board and this was being exacerbated by being constantly kept under the dehydrating effects of phototherapy lights . (As one nurse later remarked to me “they fried your little boy, Jude”)

Overnight he was basically not interested in feeding, was sleepy and groggy and also “jittery”. Any of these in isolation would not normally be cause for concern, but collectively they should have set off warning bells. Especially for a baby being treated under phototherapy lights. Although a first time Mum, I felt instinctively that something wasn’t right with my baby. There were several times when I relayed this concern to the midwives caring (?! ) for Sian and I, and each time they reassured me that everything was fine. I felt like a paranoid first time mother when in fact I was bang on the money! It was later noted by the Health & Disability Commissioner that under the Midwives code of Ethics, the act of a midwife reassurring a concerned mother should be coupled with a review of her own practice in relation to the care of the baby, to provide both herself and the mother with proof that there is nothing being missed. It’s like a double checking procedure to prevent any little problems – which could potentially later become big problems – from being overlooked. This was never done.

In fact there was just a culture amongst these midwives of casualness. No one midwife was ever in charge and no one ever double checked any of the other’s practices. Visitors were allowed to come and go all day and were not vetted by the staff. Anyone could walk into your room whenever they liked. That’s not how it is in bigger hospitals where they realise the need for a new Mum to have some quiet time with her baby or just to catch some much needed sleep when baby is asleep.

Unknown to anyone at the time, Sian was suffering from a condition called hypoglycaemia which is low blood sugar levels. This can affect newborn babies but usually happens to babies that are of low birth weight, premature or born to diabetic or sick mothers. As Sian and I were none of these, Sian was not considered to be at risk for this condition. However, the midwives who were responsible for his wellbeing had very little knowledge, it seems, of this condition and that it can, in fact, affect a so called “normal” baby like Sian. In fact any baby that has not started to feed well in the first 24 hours of life is susceptible to becoming hypoglycaemic and it is not an uncommon occurrence. But without this knowledge, the midwives continued to ignore all the signs that Sian was in serious trouble and kept “frying” him under the phototherapy lights which was only adding to his problems.

Sian desperately needed food and fluids. A bit of infant milk formula would have actually done the trick – I now know this after having my second baby who was a bit like Sian in his poor feeding. But second time around I was, of course, in Palm Nth hospital and there was no hesitation on two occasions, in giving my baby, Jack, a 30ml bottle of formula! Of which he drank the whole lot after being fed by me! I have often heard these midwives being referred to as the “Breastfeeding Nazis” and it’s not hard to see why. There is a steadfast reluctance to give a baby milk formula. I know that breastfeeding is best for a baby and I did not have to be convinced of that. I was fully planning to breastfeed my baby for months to ensure optimum health etc. In fact my second baby refused to drink formula (other than the small amounts given to him in hospital as a newborn) and I had to breastfeed him until he was 13 months old, which was fine. But – these “Earth Mother” midwives need a wake up call that sometimes Mother Nature needs a helping hand! Also, not once did any of the medical people responsible for Sian’s welfare, think to test his sugar levels. This should apparently have been an obvious thing to do given the circumstances. The outcome for him would have been way different if they had…

But…the next morning being Saturday 5th July at 10.55am, Sian had a cyanotic episode – he went blue and stopped breathing. His blood sugar levels were so low that they were “unrecordable”. Sian was rushed to Palm Nth hospital by ambulance but it was too late to avoid serious consequences by then. He had to be resuscitated on the way and he was having epileptic seizures. He was dying.

He spent the next 15 days in the neo natal unit where it took the first 6 days just to stabilise him. He was severely dehydrated and hypoglycaemic. He was having constant seizures and on the first day he dry retched for 4 hours as his tiny little body heaved in and out. Sometimes he looked very red – other times he could look grey or green in colour. He stopped breathing many, many times and was a gravely ill little baby. He had his own nurse assigned to monitor him 24/7 and was in isolation as no one was sure why he was so ill. Eventually a CT scan revealed that he had suffered a subarachnoid haemorrhage – a brain bleed – and widespread brain damage.

Had we been in a proper hospital surrounded by experienced and trained nurses and doctors, his dire situation would have been noticed and acted upon. A Paediatrician who later investigated and commented on the level of care Sian recieved (on behalf of ACC), said that what happened to Sian was “predictable, avoidable and easily fixed” – I still cannot say those words without getting a lump in my throat and tears in my eyes. We often think that it would have been better to have heard that it would have been very difficult to see what was happening to Sian and that it was a rare and unavoidable thing or very difficult to fix. But it was none of that. The simple act of throwing a bottle of formula down his throat would have meant I would not be writing this story today.

It would mean I would have had my perfect, beautiful baby boy who today at 6 years old would be doing all the things that any other little guy his age does. But instead we have a severely intellectually impaired and partially blind boy who cannot speak to us. He has severe epileptic seizures that on many occasions result in ambulance trips to the hospital. He suffered major kidney problems last year which would have apparently been extremely painful for him – he couldn’t tell us what was wrong but we knew something definitely was… because he is an amazingly brave little boy and virtually never cries with everything he goes through. So when tears were streaming down his beautiful face last year we had no doubt that it was serious. And it was – he had to endure an operation. When he came out of the anaesthetic he didn’t know what was going on and why he hurt so much. Due to his brain injury he has limited understanding and so we couldn’t really explain to him why we had let this happen to him. This is just so unfair. He tried to pull all the tubes out that were stuck into him and bled profusely – the staff in the recovery room were warned of this happening but were still astonished at his strength and determination to fight and were not prepared for it. I held him the whole time and sang to him which is the only thing that calms him down. He eventually had to be sedated again.

Sian cannot really feed himself and he is still in nappies. His little brother who is almost 3 has already worked out that his big brother isn’t like other kids. With endless hours of therapy and persistence, Sian has thankfully learned to walk. However, being visually and intellectually impaired but being able to walk (and run awkwardly but quite fast!) is a dangerous combination! He requires constant supervision.

We had all the same dreams as everyone else does for their child. We wondered if he would be good at sports or rugby like his Dad, or get good marks at school? Whether he would have lots of friends and maybe a girlfriend or wife one day? Maybe grandchildren for us? Would he be successful in his chosen career whatever that may be… and so on. But those dreams are taken from you. You spend nine months nurturing the little life inside you while you are pregnant – and in two and a half days it is ruined by someone else’s negligence. You are on autopilot – your head is spinning and you cannot comprehend what has happened to your precious baby. You are living every parent’s worst nightmare – but you don’t get to wake up.

Sian will never do any of the things we had hoped for him. My husband has a son who will not kick a ball around with him, go fishing with him or play golf with him – he won’t even be able to talk to him. His heart is broken and the loss he and I feel is overwhelming and will never go away. We love our little boy infinitely and would not be without him but – he is very, very hard work. Our friends and family often say that they are in awe of us and the daily challenges we face with a child like Sian.

We have had little respite care/help over the years – other than much needed time out when family members help out. You are pretty much left to your own devices and have no idea who to ask for help. We were suffering immense grief and pain at what had had happened and for the first two years of his life we didn’t even realise why Sian had had low blood sugar that resulted in brain damage. We were led to believe it most likely started inutero – which made me question every thing I did during my pregnancy although I was really well and I didn’t drink or smoke – I wouldn’t even eat ham! We were left in limbo and were given no straight answers even though we kept asking questions. When I think about it, that was shocking in itself. It is true that medical people cover for each other and seem to see no point in delving into why things like this happen when they seem to know that it is a colleague’s incompetence at the root of the problem. It is also true that they “lose” your notes – I thankfully got ours before they were alerted to the fact that an investigation was about to commence. Later, when ACC requested the notes, they were…lost. ACC had to use my notes to conduct their review as did the Health and Disability Commission. Thank goodness I got them first or we may never have had the answers that we now have – and to be able to try to start to come to terms with what really happened and move on with our lives as best as we can.

When Sian was 2 years old we saw a top Paediatrician who, after realising that I was effectively blaming myself for what had happened to Sian, had no hesitation in telling me point blank that I had nothing to do with it and that he was “born normal”. That started the ball rolling and I started talking to many more medical professionals and asking many more questions. That eventually led to an investigation by the Health and Disability Commissioner and ACC who both found in our favour. The H & D Commissioner found 4 midwives at the Levin Maternity Unit were in breach – one serious breach- of their code. They were made to take on further training, review their practices and write to Adam and I and apologise – but 3 out of the 4 continue to practice. The 4th quit and told us that she had always felt vulnerable that something like this could happen at the Levin Maternity Unit, indicating that the situation that existed there was an accident waiting to happen. Mid Central Health DHB were also found to be in breach for not providing the same tools and training for the Levin staff as were given to the staff at the main hospital in Palm Nth. Also, they had failed to ensure that the policies and procedures that were followed in Palm Nth hospital, were also applied at the Levin Maternity Unit – because they weren’t. ( Levin Maternity Unit were a “law unto themselves” by all accounts.) They also had to write to us and apologise at which time they admitted that these incompetencies were what caused the midwives to fail in their duty to properly document Sian’s care plan which would have alerted them to the need to conduct further tests on him and therefore have led to the discovery of his condition long before it became a serious problem.

They “unreservedly” apologised and expressed their “profound regret that those shortcomings led to tragic consequences for your son”. There have since been some changes put in place by the DHB at the Levin Unit as a consequence of what happened to Sian, and they no longer treat jaundiced babies under phototherapy lights there. Reading a letter from someone telling me they are sorry for ruining my son’s life is weird and surreal. It was like the bank writing to you to apologise for deducting too much money from your account or something… we’re sorry for any inconvenience this may have caused you?

We never thought in a million years that something like this could ever happen to us – but it did and we live with the consequences every day and will do for the rest of our lives. The anger, grief and pain you experience is indescribable. You are trying to handle all these emotions while still having to cope with a severely disabled and very demanding child. The enormous stress it puts you under impacts heavily on your marriage, relationships, job and your life in general. Apparently the statistics say that 85% of marriages/relationships fail when there is a disabled or severely ill or compromised child involved – not hard to see why. These midwives think that they suffer when their practices are put under the spotlight and investigated – but they have no idea what stress is!!!

Our firstborn, beautiful baby boy Sian, nearly died because of what I deem to be not only human error and incompetency but also human arrogance. That’s what it comes down to – some medical people who think they can do no wrong and don’t question their own actions and practices on an ongoing basis. And I’m talking about all through the ranks right through to the big fish at the top who make the policies. This arrogance seems to be at epidemic levels where midwives and the maternity system are concerned, and it is resulting in dead and severely compromised babies and lives being ruined all around New Zealand on a regular basis. Just knowing that there are people out there now expecting a baby and so excited, looking forward to it and filled with love,hope and dreams for their unborn baby – but who will end up writing their story on this website – sends a shudder down my spine. This epidemic of arrogance and incompetency within the NZ Maternity System must stop – it is as simple as that.

In my opinion, it needs to start with far more serious consequences for medical people who cock up. I fully understand that they do need to be protected to a degree simply because of the very nature of the business they are in – and that is fair. But when a life is lost or ruined due to their incompetence, inattention or lack of training – a life, in other words, that should not have been lost or ruined – then to simply have to re-train, review their practices and write to the family to say sorry…just doesn’t cut it! The punishment doesn’t fit the crime really, does it? In any other profession or even with just Joe Bloggs going about his everyday life, if you have a bad day and take your mind off the job or off the road for a minute or just a momentary lapse of concentration…and you kill or seriously injure someone…then you would be facing serious criminal charges and a custodial sentence. There is too much protection for medical people. If the consequences for incompetency were greater, then maybe there would be more emphasis placed on medical staff upskilling themselves and DHBs putting more resources into the constant revision of policies and procedures – instead of doing that after a life has been ruined when it is too late.

If telling our story can help to prevent just one more sweet little baby’s life from being destroyed, then this is all well worth it.

Jude and Adam